Sunday, October 12, 2008

How We Found the Rock.

Lily was born pretty darn hairless. She had blonde little goofle-feathers as my mom would say. At a year, we wondered if she was going to get hair. And then she did. Great big furry, spirally curls. She calls it her BIG hair. When she looks at her baby pictures, she scrunches up her nose and asks Where's my big hair? When she turned 3, she started getting furry in other places. Places it's not polite to talk about. It started as a rogue hair or two, which prompted a trip to the pediatrician in May. He ran some blood tests, but after a little research wasn't too concerned- it was probably precocious puberty. That would explain the slight acne, but my dad and brother died from brain tumors- there could be something more to this. He assured me that we start at hormone levels and go from there. The hormones came back "normal". Really there was nothing to indicate further tests unless there was continued growth or other secondary characteristics.

I also pointed out a lump on her calf that I noticed the morning before Phillip bruised his pancreas(April). The same advice was given- if it gets bigger, red, more swollen...yada yada, bring her in and we'll run more tests. In September we had what was to be our last visit with Dr. E, the pediatric surgeon who followed Phillip through his case of traumatic hemorragic pancreatitis. Unfortunately his ultrasound showed no decrease in the dilation of his pancreatic duct and she wanted him followed by the pediatric endocrinologist to make sure his enzymes and blood sugars were all normal. They pretty much are. His blood sugar runs a little high- but he lost about 50% of function in his we just keep an eye on him. Anyhoo- I asked Dr. E about Furry Lily, since I trusted her opinion. She immediately referred us to Dr. P who is the same pediatric endocrinologist seeing Phillip. She looked up the blood tests on Lily- they were not normal for a 3 year old little girl, the testosterone was too high. We needed to run more tests. She suspected a genetic condition called Congenital Adrenal Hyperplasia indicating a malfunctioning adrenal gland. Three weeks later we found out the blood tests did not support this, so it was time to look at the organ in question. We traipsed down to the radiology department for the ultrasound. Phillip had tagged along so Dr. P could see how he was doing. The U/S technician looked at our name, then at Phillip. "Hey- is he Pancreas Boy?" Yes, flying into hospitals everywhere is the action figure known as 'Pancreas Boy.' He immediately turns some insane shade of red and busies himself throwing paper airplanes around the room. Lily makes me lay down next to her, her "fro" effectively blocking any view of the screen. Although I am not a radiologist, I sometimes play one on TV- so therefore I like to look at my children's innards in cases like this. Sure it looks like random blobs- but you pick up on clues like- why so much time on that blob? You ask key questions like- is that the adrenal gland/kidney/whatever organ might be shaped like that particular blob. The key is in the response. If they respond- No that's the such and such- you're good- if they pause and say something like- No, that's NEAR the liver- well pretty much plan on being there for awhile. And when the honest to goodness radiologist pops in to introduce themselves- realize you will probably be getting to know the staff at the institution intimately. So we finally finish and are on our way back to talk to Dr. P- who now has a posse of 3 with her. Yep. This is not good. I supply Phillip and Lily with toys and snacks and hope to God that the day-to-day obliviousness and selective deafness they like to employ are on full force. Dr. P begins,

Lily has approximately an 8 cm tumor on her adrenal gland. There are two possibilities. It could be an adrenal cortical adenoma which is benign, or an adrenal cortical carcinoma........

I immediately grab my folder and start looking for a pen. One of the residents grabs a pen and says he can write it down for me. Oh really- you were gonna write down "G*& D&^% Mother F#@! Son of B&%$! because that was kinda what I was thinking. Pardon my language. Weird things pop into your head when they tell you your child has a tumor. Fortunately they were explaining what benign and malignant meant so I had some mental time to swear some more. Lily and Phillip were happily tossing the doctor's toys into the air to see who could actually get admitted to the ER first....Oh they are looking at me. Hmm I think someone asked a question and darnit I've been nodding this whole time swearing in my head. Sh#@. Fortunately they just wanted to know if they could do a physical exam. SO for another half hour or so it was words words words. I spent 4 years in college getting a degree in genetics- I knew all this- so I'll let them ramble on about Li-Fraumeni syndrome like Li and his bud Fraumeni hadn't been over to dinner once or twice in my not so distant past. OK not literally- but they discovered the link between the p53 and hereditary cancers. Their work and my family history was one of the reasons I wanted to become a genetic counselor back in the day- instead I decided that procreating was a more pressing occupation and here I am. Ugh. Words words words, appointments, surgery, yada yada, someone will call us to schedule, please call at any time. Great. We can leave. The pediatric Oncologist and her posse split to start the research, and Dr. P looks at me. Don't make eye contact- you are successfully holding yourself together......So I guess Mr. Mallory is gonna get quite the call at work huh? I laughed- allright we'll keep you- you have a sense of humor. We banter about something- could not for the life of me tell you what and I managed to get the kids to the car. I can do this- I can drive home. I'll leave Phil a message at work to call me- he will call when he can. I take a deep breath- the airman at the front desk answers and a voice that sounds nothing like me shakily asks for Buddha. I'm not religious or anything - that's what they call him. He's debriefing- she says- I'll go and get him... NO, I cut her off, Just have him call as soon as he's done. I spend a few minutes trying to collect myself, and we start home. Phil calls and asks if everything is Ok. I blurt out LILY HAS A TUMOR. Where are You? On the way home I tell him. I'm on my way. I hang up. Phillip says "Is something really wrong with Lily?" So I tell him with the air of- really it's a little thing in her belly and it has to come out so she doesn't get sick. The look in his eyes conveys the terror- I reach back and squeeze his hand. It's gonna be OK buddy, she's gonna be fine.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)